How do you learn about a disease you have without scaring yourself to death!?

Tag Archives: mssoftserve

I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month) – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a week). And okay… I am motivated by doing something that could help peeps like me who have MS. It’s a non-profit.org afterall. I’ve founded a non-profit org (once in the past 10 years)- I get it.

I participated in spite of the fact that I resent selecting numbers to describe my variable, unique version of MS (#5 depends on how i feel that day)* And I hate that by participating in surveys for the greater-good makes it glaringly obvious that I’m getting worse. Sometimes I feel offended by the questions. I’m always looking for that last option that reads #5- Stop asking me these questions or #6 None of your business. Those usually deteriorate into one word expletives by the time I get to question #104 and at that point I’m amusing myself with my real life responses which aren’t fit for any survey, but do reflect how I’m feeling. (depending on the day).

But today was a little different. I didn’t mind (as much) the labels or generalizations that I was forced to select.

It seems on some days I can find the “feel-good” in how I respond to the question “how often does pain interrupt your normal activity” (#5- rarely) and not so bad about the “how often do you rely on a cane or someone’s arm to feel stable.” (every day).

*My name is Amy and I’m a compulsive-(parenthetical)-hyphenating-italicizer!

If you dumped a bucket of ice for the whole world to see, then contributed to the ALS association you were a part of a worldwide effort. Cos your contribution helped raise $115 million for that organization. That’s $95 million more than was raised last year for this cause. And even if you didn’t make a direct donation, by spreading the word about this disease to others via social networking you were key to the best charitable effort ever. Awareness is 90% of giving- because afterall you can’t know what you don’t know and you can’t support an organization for a condition that you didn’t know exists.

Stomp it out, smash it out, waaayyy out.

So let’s spread the word and raise a few dollars for what will be an important part of coping for people who are living with MS (and peeps who care about them). MS SoftServe is a non-profit .org that will put learning and teaching about MS in the control of all of us who are living with it. It is a customizable learning website will lessen anxiety and empower us on new levels. Check out this link to learn more about MSSoftServe and this one to donate.

Why Halloween is the Perfect time for MS fundraising!

Orange is the color of the designated ribbon for MS

MS is sooo scary.

Stomping on a pumpkin to metaphorically stamp out MS is sooo satisfying!

Cut to the Cut Amy!

Many of us will carve a pumpkin and put it on our porch on October 31st. But what to do with it on November 1st? Before it hits the trash or the compost heap why not smash it, video tape it and spread the word about this effort. Getting the word out about our effort is so important and a few donations wouldn’t hurt in getting us closer to our goal.

I know, I know. You are shaking your proverbial head, clucking your proverbial tongue saying, I knew after that LJBF (let’s just be friends) letter that you would forget about me. But please, blog, let me explain.

You see, the writing at MS Health Central has really picked up and I’m finding the content of that site to be valuable; I’m honored to be a part of it. And get this- I’m doing a video project there as well. (of course I could be doing the same with you, just saying..)

Then there is Wego; an incredible site that “Empowers Health Activists.” (check out the link to see what that means! It’s the blue word “Wego.” But of course you know that!) There are some very exciting things happening on that site and I’ve been contributing in many ways. I was recently on a panel talking to pharma on behalf of the MS community. And…I’ve been a part of video conversations with meaningful topics like “The Decision to Use an Assistive Device”– but those haven’t launched yet, so you wouldn’t know about it. (I’ll be sure to keep you “posted” if you are interested!) Oh, and most recently I’ve been looking for other people with MS who want to be in these video conversations. So blog, please spread the word.. I’m sure that there are a lot of people with MS who would love to participate… and you are still in my top 3 list of reaching out to peeps with MS. (PWMS)

I’ve also been very busy with MSLOL Radio– the monthly webcast that highlights people who have a significant role in the community. And there are so many! (I hope you noticed that I used your name for this show; so you should feel honored.) Because I want to “give the people what they want” I am taking suggestions for topics.

And then there is MS SoftServe. Of course I’ve been talking about this with you for ages now. But things are ramping up. We have applied for our first grant and have many more apps on deck. Getting this site up and running is imminent and it will not only be invaluable to the newly diagnosed, but also to the long term-ers who don’t want to know about every possible MS symptom that may never effect them. (MSSoftServe.org is the staging ground.) And there are some amazing features for individualizing the learning experience. Oh, I forgot to tell you… I have another blog dedicated to MSSoftServe. Perhaps you’ve run into each other at the water cooler. This has been so helpful in keeping everyone up to date on our progress.

Please don’t look at me that way. I promise I won’t go so long without a meaningful entry. Hey, here’s what I’ll do… I won’t just post links to my other writings – I’ll post information about the links. That way people will stop and read you for a bit- and it will keep you update on where I am. How does that sound?

I won’t say how important you are to me; I don’t want it to sound hollow. I’ll just prove my loyalty to you and not go months without talking to you. You’ll see. It will be great!

In case you haven’t heard the good word, let me be the first to tell you that MSLOL is coming to blog-radio. Join me on Monday, September 27th to hear the audio component of this blog. Very exciting times, these are.

How will that play out, you ask? I’m not sure.

I can say I’m great at talking and laughing and speaking of my life mission (the MS SoftServe one!) I’m happy to tell anyone just about anything about my experience with MS.

Ok, so that’s two things.

Oh, and each show I will interview a person from the MS community. (Isn’t that a nice vague requirement?) The debut show guest will be Kim Gledhill, a fascinating woman who has been living with MS for 14.5 years and has an interesting story to tell. She is part of the constantly growing community of people “living with it” on Facebook. You know, the social network that connects you to all of your long lost friends and those who you’ve passed on the street once. What you may not know is that Facebook is an incredible resource for those of us living with that two letter suffix; and prefix for the those of us who are women. (As I like to say, I’m MS-squared!)

So here is the ticket to listen:

Here you will find out important facts like that it will “air” September 27th which is a Monday, at 7pm EST and how to log on. And check this out, you can listen online or via your phone. Ah, modern technology! And don’t lose sleep if you still can’t make that time slot. I will be posting the audio file here. Of course if you are listening live, you can call in to ask or comment on whatever you so desire. (Let’s keep it MS related, shall we?)

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About Amy

Hi ! Thanks for visiting MSLOL Blog. With all most three decades of MS under my belt my favorite coping mechanism is this here blog. Writing is a great way to have control (cmd-X, cmd-V). If only the rest of life were so easily managed. I'd be doing some serious cmd-Xing on my brain!

So browse around.. and be sure to check out MS SoftServe. It is about to change how we learn about MS on the web.

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